Hi, I suffer from severe PLMD. I’ve just been prescribed pramipexole but after reading some comments am frightened! Any good experiences?

[Coled03]

I would add that I also have mild tardive dyskenisia caused by adhd medication. My neurologist hoping that pramipexole could help settle this too. Shall I try it?!! Thank you

[Joolsg]

Hi there,

What is the name of your ADHD med? Also what other meds are you currently taking , including anti histamines (& cough & cold meds).

Many of us with RLS ( and PLMD) wish our doctors had investigated our med history and arranged blood tests before prescribing dopamine agonists.

They’re no longer first line treatment for a very good reason.

When did the PLMD start? It may coincide with the ADHD meds.

[Hidden]

Sorry to hear about your PLMD, ADHD and dyskinesia.

It seems an unusual combination.

Your neurologist may be right, but hopefully you can clarify a few things.

I believe medications used for ADHD boost dopamine levels as low dopamine I recall, is a factor in ADHD. I might have that wrong. Tardive dyskinesia, on the other hand is generally caused by medicines which lower dopamine levels!

In addition, RLS/PLMD are also usually worsened by medicines that lower dopamine levels e.g. sedating antihistamines.

So as Jools says, it would help to know what your ADHD medication is AND any other medications you take at all.

It's also difficult to say, in your case, whether you PLMD is an inherited disposition OR if it is caused by your medication.

Obviously, if it is caused by your medication, you can't just stop taking it which is what's usually advised if something is triggering PLMD.

This puts you in a dilemma.

The pramipexole may be very successful in helping control your PLMD. However, I'd suggest you find out more before trying it. This is because there are significant problems with it, which you seem.to have some awareness of.

In answer to your question, any good ecperiences, the answer is not many. Lots of bad ones.

This is probably because people who have good experiences haven't taken it long enough to experience the complications. When you first take it, it's impressively effective. More commonly than not, that doesn't last.

Also as Jools says it might be worth having some blood tests first. These would be for any deficiencies you may have which could be exacerbating your PLMD. The principal deficiency associated with RLS/PLMD is iron. Lesser ones are magnesium, vitamin B12, D and E.

In most cases of RLS/PLMD it is better to look at iron deficiency and aggravating factors first before dishing out drugs. As well as medications there are other aggravating factors.

It may be that you do end up taking the pramipexole. Your situation is unusually complicated and the alternative medications for RLS/PLMD, (gabapentinoids), may not work, because these aren't dopaminergic.

Additionally, s gabapentinoid may make your ADHD worse.

It would be really good then to know what medication you're taking and if taking a dopamine agonist, (which is what pramipexole is), is your best option, there are precautions that can be taken to reduce the risks.

[Coled03 in reply to Hidden]

Hi, thank you and Jools for responding.

I had mild plmd prior to taking adhd meds. It was severe enough to keep me awake all night but would only occur occasionally and could be settled by clonazepam.

I started taking Elvanse for adult adhd in Feb 2019 and quit around January 2020 because of Tardive Dyskenisia like side effects - pursing lips, moving tongue. Not so bad to be noticeable to anyone else perhaps but bad enough for me to quit. The Elvanse also increased the severity of the plmd, which now occurs around 70% of the time.

My psychiatrist yellow carded the Elvanse company as TD is not a listed side effect but it transpired it is known but is so rare it doesn’t have to be listed. Nobody seems to know why this happens because, as you say, it doesn’t add up with the dopamine theory of how these things work!

My psych has done a lot of reading and discussed my situation with colleagues who all seem baffled. One theory is that the D1 was overridden by the D2 (I think!) and that a low dose of pramipexole might increase the levels and treat both the plmd and the td.

Alternative suggestions have been an increased dose of clonazepam for 6 weeks only to see is this settles everything down; guanfacine (apparently can help adhd and also tics) or aripiprazole.

I currently take a ferritin supplement and a vitamin d supplement as GP found my levels on the low side, although not deficient.

I don’t take any medication apart from clonazepam if I really can’t sleep. I find a tiny dose really helps - I can break a tablet in thirds and that amount can do the trick. Sometimes I take an over the counter codeine/paracetamol as this helps too.

I would really love to get this under control, as feel I can’t even share a bed and don’t want to go on like that forever. However I’m so worried about taking something that could make the situation worse by increasing the severity of the TD or the PLMD. Sometimes I wonder if I should just live with it and not add any further medication into the mix. The adhd I can get by without treating if I change my lifestyle, I just find it hard to cope with life as obviously have a lack of executive functioning skills but if I don’t take too much on, I can get by.

I’m 48 year old female. Probably perimenopausal but don’t have any classic symptoms of that but I wonder if hormones play a role too.

Help! Ha ha

Thank you

D

[Joolsg in reply to Coled03]

Hi D,

Thanks for the detailed info. I’m sure Manerva will reply soon - he has excellent knowledge on drugs and may be able to offer alternatives to the ADHD drug.

Interesting that you say the PLMD keeps you awake- that sounds like RLS to me. PLMD sufferers are usually unaware they have a movement disorder until their partner complains of being kicked in the night.

However, treatment is the same.

Going back to your blood results, your GP says ferritin and Vit D are on the low side. Ask for the actual figures. For those of us with RLS, ferritin needs to be above 100, preferably above 300. Most GPs are unaware of this.

Taking ferrous bisglycinate (gentle iron) every OTHER NIGHT raises levels faster than if you take every night. There are several scientific research papers showing this. It can take quite a while to raise levels by taking oral medication so if you can persuade your doctors to give you an IV infusion, this is the fastest way to raise levels. Raising ferritin can resolve RLS in 50% of sufferers so should be the first step for anyone about to start meds.

Clonazepam is very helpful for RLS but doesn’t seem to work long term.

There does seem to be a link with hormones but strangely some find their RLS improves after menopause, others that it worsens their RLS.

I suggest you raise iron levels first whilst taking the clonazepam.

Pretty sure Manerva’s knowledge of drugs will be really useful to suggest any meds if raising iron levels doesn’t make any difference.

Jools

[Coled03 in reply to Joolsg]

Thank you for your advice. It’s interesting that taking ferritin every other night is more effective than daily!

I’ll ask my GP for the actual levels too.

[Hidden in reply to Coled03]

Hi, thanks for sharing further information.

Just a couple of points.

It may be a misapprehension but there is no ferritin supplement, as far as I'm aware. The ferritin blood test is a test for "stored" iron. If ferritin is low, (under 100ug/L) it can be raised by taking iron. Jools gives more detail on this.

The reason for taking it every 2 days is that when you take iron the body releases a hormone called hepcidin. Hepcidin inhibits the absorption of iron and it can do this for up to 24 hours. There's no

point in taking more than one dose of iron a day and little point in taking it the next day. A further point is the amount you take isn't really significant in this, so you can take double the daily dose every two days. However this is more likely to upset the gut.

Also to reinforce what Jools says, most people with PLMD suffer from the PLMS form i.e. PLM while Sleeping. It is much rarer to have it when awake. Additionally, although 80% of people with RLS also have PLMD, it's much less common to have PLMD without having RLS.

Furthermore, although it doesn't appear as part of the RLS diagnostic criteria, it appears quite a few people with RLS, including myself, do have involuntary movements as part of their RLS.

I'd say then you have RLS, but you may have PLMD as well. The causes are similar, the treatments virtually the same.

I'm afraid I'm not particularly knowledgeable about medications for ADHD. I did read about the role of dopamine in ADHD at one point because my ex-wife suffers adult attention deficit.

Interesting what's said about D1 and D2. This refers to the different types of dopamine receptors, of which there are 5. The dopamine agonists that are effective for treating RLS target D3 receptors.

RLS/PLMD are partly due to a lack of dopamine receptor sites not a lack of dopamine. That's why dopamine agonists work.

In relation to this a side effect of the agonists is raised dopamine levels. It's also been found that the agonists can cause "downregulation" of receptor sites which in turn may lead to a worsening of RLS known as "augmentation". Augmentation can also be caused by Levodopa, which is used to raise dopamine levels in people with parkinson's disease.

It appears then that raising dopamine levels can cause a worsening of RLS/PLMD.

Elvanse, an amphetamine, raises dopamine levels.

It is possible then that the elvanse precipitated your RLS/PLMD in a similar way that dopamine agonists can cause augmentation.

If that's the case then generally speaking, from my limited knowledge, it doesn't seem a good idea to take pramipexole!

This may be something you can discuss with your neurologist. It's surprising how many doctors, including neurologists are unaware of augmentation.

As regards the medical treatment of ADHD, it's hard to strike a balance. anything that lowers dopamine levels can lead to problems such as tardive dyskinesia, attention difficulties and depression. Anything that raises dopamine levels can lead to compulsive behaviour, addiction and psychosis.

From my own experience of being married to someone with attention deficit, the main thing is to be an expert about it and be able to recognise how it affects you and those you're close to. It's important that you and your partner are willing to work together to understand how you each affect each other and deal jointly with difficulties.

You may have developed "maladaptive" coping strategies over time that you feel may have helped you, yet actually make things worse. If you have any, it's good if you can recognise these.

Nobody is to "blame" and there are adaptive strategies you can adopt. Co-counselling with a counsellor experienced in dealing with ADHD can help.

It may be that having stopped the elvanse, albeit some months ago, your RLS may subside. The clonazepam helps.

The alternative medications for RLS may possibly make your ADHD worse because they suppress glutamate activity, but you could also discuss that with your neurologist.

[Coled03 in reply to Hidden]

Thank you everso much for such a detailed reply.

I checked and it’s folic acid that I’ve been prescribed, not ferritin (having an adhd moment!). Do you think that’s effective or is a different iron supplement better?

I’ve decided to try the P. and see what happens - I’m just thinking that the psychiatrist and neurologist can sort it out if it doesn’t suit! I hope! I just feel overwhelmed with the choice as it all seems a bit trial and error!

Thank you again

D

[Hidden in reply to Coled03]

Folic acid is a vitamin, iron is a mineral.

Folic acid is usually taken along with vitamin B12.

Ferritin is not something you take, it's how to body stores iron by attaching the iron to a protein.

To raise your ferritin level, you take just an iron supplement, e.g. "gentle iron".

Normally, I'd say don't take pramipexole, take gabapentin. However, as I wrote earlier it might make your ADHD worse.

Be very cautious with the pramipexole. Take the smallest dose i.e. 0.125mg (0.088mg) and if it works stay on that dose as long as you can.

If it doesn't work or starts failing after a while, increase to 0.25mg (0.18mg). If that works great! Stay on that dose as long as you can.

If that doesn't work at all, go back to the neurologist. If it stops working, after a while, do NOT increase the dose, seek further advice.

Doctors tend to urge people to increase pramipexole to doses that, altough still under the "official" maximum (0.75mg in the UK), put people at a high risk of serious complications.

Be aware that although not actually "addictive" pramipexole does cause physiological dependency and once you've developed the dependency, missing a dose will cause "rebound" and withdrawing from the drug becomes very hard.

If you ever find yourself developing cravings or things or feel compelled to keep doing something e.g. shopping, eating, gambling etc then seek further advice.

[Coled03 in reply to Hidden]

Thank you again for your time. I will certainly heed your advice and stick to the minimum dosage. If I notice any odd behaviour or weight gain I’ll taper off and quit and try something else. Let’s all keep hoping for a miracle!

[Hidden in reply to Coled03]

Lol!

I don't think looking out for odd behavoour in my case, would have been much help.

Some people thought I was odd before I ever took prami and even if I'd become odder, I don't think I would have noticed myself.

Better ask others to keep a close eye on you, but make sure they're not odd too. 😊

[Hidden in reply to Coled03]

PS, I read that both guanfacine and aripiprazole can be used for ADHD when stimulants are unsuitable or don't work. They work differently. The first has no dopaminergic effect, which sounds good, the second is a dopamine stabiliser.

They may work for your ADHA witnout affecting your RLS.

[Tormid]

I have been taking pramipexole for nearly 30 years without any

serious problems, I can't imagine what life would be like without it.

[Coled03 in reply to Tormid]

Thank you for taking the time to reply. I’ve decided to try it and see what happens!

[Hidden in reply to Tormid]

It's great that it's done so well for you for so long.

Unfortunately, statistically speaking you're in a small minority and 30 years ago the complications it causes weren't known.

A few people support it's use for RLS. not parkinson's disease. They mainly appear not to have been taking it that long. Only a very few claim to have taken it more than a decade.

For somebody who's newly diagnosed, based on the high probabilty of complications, I always warn people of this and they can make their own choice. Especially when there are now alternatives with less complications. I guess, you may have never have tried anything else.

No criticism intended, in view of the statistics if anyone does present pramipexole in an unreservedly positive light, I am aware that many people read this posts, who may never respond. They have the right for accurate up to date information about the benefits and costs of each of the RLS medications.

I have no wish to deter you from continuing taking pramipexole.

For me, and many stories I read each week, there is life after pramipexole and it's a better life.

It's not for everbody..